Friday, April 18, 2014

Sarcoma Treatment Journal Entry One

Before we get to the journals a little background.  I noticed something in my scrotum last year around this time and went to a urologist.  He determined I had a hernia.  However the urologist did not perform an ultrasound or MRI and sent me on my way to a hernia specialist.  Do not make the same mistake.  Get the MRI and Ultrasound if you notice lumps no matter what they tell you.  Insist on it you have to be your own patient advocate.  And get ready for paper work from the insurance companies and healthcare providers.  Get your bills all on a low monthly payment plan so your household and regular life aren’t up-heaved by $60,000 dollar radiation bills.  If you have good insurance you’ll have a cap on what you pay a year so do not get blown away by the hospital bills.  You are responsible only for your yearly cap in some cases as little as three grand.  And if you don’t have insurance get some today!

The first order of business was to get my imediate family educated I went to Florida to get a no mesh hernia repair.  The doctor down there during the procedure discovered a nasty tumor and excised it out of my scrotum and sent all the tissue off to Miami to a specialist who determined I had a well differentiated lipo sarcoma with DE-differnetiated satellites in the hernia sac.  Scary stuff, scary words until you consult Dr. Google and find out well differentiated is a low grade tumor almost benign and that the DE-differentiated is the maturation into a higher grade tumor.  Its important to know what you are up against.

Here’s  my first email missive off to my immediate family:
___________________________________________________

Brothers and Sister,
There’s a link below with a lot of background information. Keep in mind the tumor is out I just need to get imaged, and clean out any residual disease the hernia specialist may have left behind. I’m confident I’m pretty clean because Dr. Tomas (the hernia surgeon) also works with lumpectomies and other cancer related diseases. So it’s not like he had an untrained eye on me.

I’ve also attached my pathology report if you want to look up terms. Please keep that private and confidential in the vault that’s not for anybody else’s eyes but you three. I’m taking a huge leap of faith here in sending it to you three so please don’t share that path report with any other doctors, friends or god forbid facebook. I’m just trying to get the big three (that’s you guys) up to date. And I don’t think it would be wise to share it with Mimi or Poppie either. All those unfamiliar terms are shocking and grim. For instance the stage number refers to size not the malignancy potential as in other cancers so being unfamiliar with the terms can lead to jumps of conclusions.

Essentially the area of concern is from just below my “deep” ring in the inguinal canal and my right scrotum (link below). It was a low grade tumor not attached to anything but it spun off some nastier nodules in the hernia sac three to be exact but they are out as well. No hemorrhage and necrosis is a good thing if you read the report.

The Mayo clinic link below is also a quick concise primer that you should read (ten minutes). I’m trying to keep mom and dad updated daily, and remember the best way you can help is to just listen. If you want a daily update call them or each other. The phones been ringing off the hook with both families calling and while everyone is well meaning it’s still grim reaperish like the guy in the first poltergeist movie at the screen door (your all gonna die in there). He was awesome wasn’t he?!!?

poltergeist

If you don’t like something I’ve said just let me vent, and don’t conveniently run for the exit like you have been so offended. I mean if you call and get me talking about this shit the least you can do is hear me out and if you don’t like it tough.

Now I’m going to be fine and have a great positive attitude and the power of the mind and the power of words should never be underestimated. So guard your thoughts, and guard your words or you might manifest just exactly what you don’t want to happen not only with me but in your own lives. If you don’t believe that tough shit I do so you need to respect that.

Stop projecting on me like I’m some idiot who doesn’t know the score. Do I call you up and rag on you about what you are supposed to be doing or not doing no I don’t – and we all have areas we can improve in or do better want me to list them…you don’t need me too right because you know yourself and you are adults capable of making your own decisions and well informed (me too).

Anyway that’s a vent respect it and let it go. Okay, so that’s that lets all just act normal and not wig out. I’ll try to send out emails from time to time to keep you posted.

The latest: My chance for re-occurrence is lower if a high volume facility does the work.  I went to a specialist with my hernia and you bet I’m going to see the specialist for the sarcoma. As far as how I got this I may never know but the first thing the doctor asked me is where do you carry your phone. Any possible agent I’m moving including computer towers I have been sitting next to for the past twenty years and herbicides on my lawn the neighbors. All the toxins are out of the house and Kris can handle the chlorides for the pool. That’s it for now.

Alright I’m out – here are the links – get up to speed – if you want to make me happy or fell better read them – they’ll answer a lot of questions for you – knowledge is power.

Paul
http://www.mayoclinic.com/health/soft-tissue-sarcoma/DS00601
http://sarcomaalliance.org/sarcoma-centers/
http://www.anatomy.yalemedicine.org/Lab_10/m3.php

No comments: